Recently, I went to an appointment with one of my specialists (not endo related). After sitting down and saying hello, he tried to refresh his memory about my case. "Oh yeah, you're the one with Endometriosis. Oh man, didn't you have a severe case? Yes...oh wow, now I remember, you have EXTENSIVE disease." Then I reminded him of my other issues, and got the typical shocked reaction. 

Being a patient with multiple, complex diseases and a lengthy medical history, I'm not surprised when doctors become overwhelmed with my information. This is something I've grown accustomed to. I know I'm "weird," as I would put it, complex. I continued to go over my diagnoses of adenomyosis, renal tubular acidosis, and medullary sponge kidney. As we were reviewing my long list of medications and supplements, my doctor stopped me, asking why I was taking a few of them. "They were recommended by my fertility doctor," I explained (so he didn't think I just ran to the vitamin store and threw a bunch of stuff in my basket). Then, he said something that nearly knocked me off my chair. 


"Should you be trying to get pregnant? I mean, even if you do get pregnant, what would that be like??"


Whoa. Harsh.


I tried to recover, and gracefully replied, "Um...probably difficult, but my husband and I still aren't finished trying for a biological child, although we have started looking into adoption." 


The rest of the appointment went fine. I got some good news and some not so great news, and left with a plan moving forward. Yet, as I climbed into my car, raining pouring down outside, I couldn't shake the feeling those words left on my skin. That feeling of disquiet, of judgement, of somehow doing something I shouldn't. 

There are an awful lot of "shoulds" being thrown around in the medical field, especially when it comes to treatment of endometriosis and pregnancy. At age 18, I was told that because of an SI injury, I would likely require bedrest for any pregnancy I might have. Since age 22, I've been told I "should" get pregnant, as soon as possible, that it would cure my disease by resetting my hormones (which, by the way, is an absolute myth, and a cruel one at that; it is often difficult to become pregnant with endometriosis with the inflammation and anatomical distortion that come along with it, let alone the hormonal imbalances and ovarian dysfunction that can result from traditional hormone treatments). 


My husband and I let the "should" of conceiving turn our lives upside down when a doctor told us two years ago that we should get pregnant immediately if we ever wanted it to happen. Over the years, I've been told I should go to this doctor or that doctor, I should trust my doctors implicitly, I should try natural remedies, I should meditate, I should work less and eliminate stress on my body, I should relax and let things happen the way they should, I should worry less, I should have fun with trying to conceive, I should take the aggressive approach and do IVF because I have stage IV and I obviously could never get pregnant on my own, I should have sex every other day no matter how much it hurts, I should only have sex within a short window determined by peeing on a stick, I should not worry about when I have sex because then there's too much pressure, I should let a doctor push and pull my hormones based on his or her typical protocol despite my personal (negative) history with ovarian stimulation, I should exercise more, I should exercise less, I should stop thinking about it so much, I should think about it MORE, I should, I should, I should!

 And then there's the phrase I absolutely hate the most:

"You shouldn't try to get pregnant. You'll pass your bad genes onto your children. How selfish."

I'm not joking. People have said this to me. More than once. 

I could go on and on about why this statement is misguided (and extremely insensitive). But what it really boils down to is it is none of your damn business whether or not I procreate. I have an incurable disease, yes. I also have severe allergies, and a terrible sleep pattern, and a horrible addiction to chocolate, but I will love my child more than you can ever possibly fathom, and would do everything in my power to make sure that if my child displayed symptoms of any of my diseases, I would get them to the BEST possible care available, and pass on all of the knowledge I have so they can live a better life than I did. 

The kicker in this situation, however, is that it wasn't said to me by someone who didn't understand what they were talking about. This was a doctor that I go to for medical care, a doctor that I happen to like and trust. To be questioned about whether or not I should continue to try for a biological child, as if he was asking me whether or not I should continue to eat red meat, was not only inappropriate but completely unprofessional. Whether I should or should not try to have a child is completely up to me, my husband, and my fertility specialist. 

As it would happen, I had considered a hysterectomy earlier this year to eliminate pain from adenomyosis (a hysterectomy won't help endometriosis, but it can relieve pain associated with adeno). I was questioning whether or not I had hit the end of the road, whether my body had had enough, and I asked my surgeon to tell me what to do. He said something that just reaffirms that he has my best interests, both physically and mentally, at heart. 

He told me that if I had any doubt in my mind, I should not take away my chance at having a biological child. Even though he knew the extent of my disease and the toll it had taken, he continued to support our desire for a biological child, and would not even think of putting his opinion into the equation (despite my great desire to be told what it was!). 

I wish I had explained to the doctor who questioned my decision about the fact that I'm nearing the end of my journey trying to conceive. Yes, my body has been through a LOT (five surgeries in two years, two of which were emergency surgeries in the last 6 months). Carrying a child to term with my adenomyosis and back issues would be difficult, but I knew that going into this. I never thought it would be as difficult as it has been, but I also never thought it would be easy. Being a mother never is. 

When my husband and I discussed trying again after our first miscarriage, my NaPro (fertility) doctor asked me how I felt about it. I said I was kind of nervous, and very anxious about what problems we might face, especially knowing that after one miscarriage, the chance of another goes up significantly. He said something that almost made me cry. He explained that I was making a sacrifice by being willing to carry my child. I was not only sacrificing my body, but also opening myself up to the emotions of what might be. To continue trying would mean opening myself up to heartbreak, along with the medical complications, but that I was willing to do so because I wanted to be a mother, and I wanted my baby. And that was the least selfish thing I could possibly do. 

So, should I keep trying to get pregnant? That's a really great question, and it's one that takes a lot of consideration and deep reflection to answer. This month, I have begun what I believe is the last leg of my journey. I have taking a drug that will hopefully help us conceive. It is often prescribed to women struggling to get pregnant before moving on to more aggressive approaches, like IUI or IVF. If it doesn't help us, I'm pretty sure I will be finished trying. Despite what some might think, I do know my limits, and I believe this is as much as my body can handle. 

I don't know what the future holds for me and my husband, but I do know that we made the decision based on what we feel in our hearts, not what someone said we should do. 

So the next time you have a conversation with someone about fertility, no matter what your opinion is on the matter, just be supportive. It doesn't matter whether you believe they should or should not do something when it comes to having a child. If you find yourself about to mention what you would do in their shoes, don't. Trust me. That's one should that you should just keep to yourself. ;) 

Anyone who knows me knows that my husband and I are big Disney nuts. I was speaking with someone a few weeks ago about why we enjoy Disney so much. I know that they're widely recognized as a gender biased, money making corporation, but when I really think about it, I realize it has quite a lot to do with having Endometriosis. Living with a chronic illness can be a never-ending stream of disappointments and reminders of our bodies' limitations. Over time, this really takes a toll on our self-esteem and general moral. 

There's something about Disney, though, that makes all of this just a little bit easier to deal with. For many of us, Disney movies played a huge role in our childhood. Disney was often the source of our favorite movies, the songs we loved to sing, and the characters we emulated, for better or worse. Disney, with all its flaws, offers us the chance at escapism. When it first premiered in 1937, people loved Snow White because it offered them an escape from the dreary drudgery of reality, 83 minutes of bright colors, cheerful music, and slapstick comedy. 

That escapism, I believe, is what drives my love for Disney. When I'm having a horrible pain day, all I want to do is burrow under the covers where no one can hear me scream, hold my heating pad tight, and have a Disney movie marathon. When I miscarried last year, I regularly belted "Let It Go" at the top of my lungs while driving home from work. I'm sure the other motorists who may have taken a quick glance my way thought I was some kind of weirdo, but it was honestly the cathartic release I really needed.

My husband and I go to Disney World once a year, even if it's just a short weekend trip, because at our Home Away from Home, we can forget our troubles and just be kids again. While some people might think that stage performances, parades, and fireworks extravaganzas centered around the belief that "Dreams come true!" might be too sugary sweet and out of touch with reality, that's exactly why we love it! Day in and day out, my dreams do NOT come true. Living with chronic pain is debilitating and downright soul crushing. It feels like bad news is always just around the corner. I've come to expect the worst because, for me, it usually happens! 

That's a pretty bleak outlook on life. It's the reason so many people who live with chronic pain have debilitating depression. And it's no way to live. 

For us, visiting Disney World is a place to regroup and chase our cares away. It's where "Have a magical day!" is the standard way of saying goodbye. It may not seem like much, but it makes a big difference to focus on the magic, as orchestrated and scripted as it might be. It's a place that reminds us what it felt like to be five years old, where the only things we had to worry about was how to weasel our way to a second piece of cake, and which Lisa Frank coloring book to use next. It's a little taste of that euphoric sense of hope that only comes from believing in Santa Claus and just knowing, deep down in your bones, that everything is going to be ok. 

So go ahead, laugh a little bit the next time you hear I'm planning my next Disney trip, or when you find out just how many times I've watched Frozen (it's probably into the triple digits by now). I'll send you a post card. ;)

My husband called me this evening to ask if I wanted any snacks at the grocery store. Why yes...I did. But, I told him, it needs to be low fat (still adjusting to not having a gallbladder) and gluten free. Well, ladies and gentlemen, he hit it out of the park! He remembered my secret ingredient for lowering the fat content in cakes, and came home with gluten free cookie mix and a glorious can of pure pumpkin! (Did I mention I'm a stereotypical almost-30-something who totally buys into adding pumpkin to EVERYTHING? Well, I am. Don't judge me.) 

He called me into the kitchen and within 20 minutes, I was enjoying this sinfully delicious, yet slightly less guilt-ridden, dessert! For added fun, we used two ice cream scoop sizes to create the Mickey shape. Because we're cool like that.

Here's the recipe! The best part is not only that it's gluten free, but there is also no oil, butter, or eggs! No, the pictured ingredients are not organic, but I'm sure you can find suitable organic options that will taste just as good!

Gluten Free Pumpkin Spice Hidden Mickey Cookies
Ingredients
1 box gluten free sugar cookie mix
1/2 can (about 7.5 ounces) pure pumpkin
1 tsp baking soda
1 tbs pumpkin spice
1 tbs water
1 tsp vanilla extract
1/2 bag chocolate chips (or nuts, raisins, whatever strikes your fancy)

Directions
Preheat the oven to 350. In a large mixing bowel, whisk dry ingredients. Add pumpkin, water, and vanilla, beat on low-medium until smooth. Mix in chocolate chips. Using a large ice cream scoop, arrange cookie dough on a greased baking tray with 1-2 inches of space between. Use a small ice cream scoop to add the ears, and bake for 13 minutes, or until golden brown and dough bounces back when touched gently on top. Remove to a cooling rack and enjoy! 

Living with Endometriosis, or any chronic illness, can be relentless. When it feels like things won't change no matter what you do, it becomes difficult to see the light at the end of the tunnel. We get so mired down with another day of pain, another complication, another disappointment, and well...it's enough to send anyone back under the covers for a week. 

This year, I've had three surgeries in six months...I keep repeating that to myself in my head. Eight weeks of missed work, cancelled lunches with friends and family, yet another event to add to the medical history. I recently went to the ER because of post operative chest pain (I was fine), and explaining my medical history felt like recounting the last season of Game of Thrones. "Man, you've been through the ringer!" 

Tell me about it. 

When I list out everything that has happened since my first surgery in 2012, I get a little overwhelmed. Have I really been through that much? A surgery, a round of Lupron, bone density loss, hair loss, starting trying to get pregnant, a round of Clomid, a ruptured endometrioma, taking medical leave from graduate school, an excision surgery, a miscarriage, going back to school, another two endometriomas, a blocked ureter and resulting cystoscopy, another excision (with surprise bowel resection), a cholecystectomy...

It's enough to keep anyone up at night. Is this real life? Is this reality? Someone wake me up. 

But no...I'm already awake. Over the past week, I've struggled with insomnia. As often happens during my recoveries, my sleep schedule became very skewed. At the worst, I went to bed at 7am and slept until 4pm. I felt like I was becoming an owl. The inactivity and inability to enjoy the things that usually keep me busy (working as a nanny, sewing in my free time, getting out and about to run errands and spend time with my husband) was driving me batty. But I realized what I needed. 

I needed to recharge. I needed to remind myself that the past does not define who I am. It doesn't matter how many tough things that happen in life...tomorrow is a new day. Yeah, a lot has happened in the past two years. Yes, it IS a lot to deal with, and I depend on my support systems to help me get through it. I do get really down sometimes. That doesn't mean that it will be like this forever. My life is wonderful, despite my chronic illness. Those days were tough, and I'm still recovering from my surgery. Heck, I'm still struggling with adenomyosis, infertility, and pelvic floor dysfunction, but I also have an amazing, supportive husband, a job that makes me happy, hobbies that give me a sense of accomplishment, and a whole lot of people who support me. 

So when I was still awake at 3am on Sunday morning, I embraced it. My husband and I jumped in the car, drove 2.5 hours to the Kancamagus Highway, and did something we love to do together: have an adventure! 

I reconnected with my husband by getting out and enjoying a beautiful sunrise and fall foliage. For the day, I forgot about my problems (even though I still needed a pain pill for mind numbing cramps). They didn't go away, but the next time I'm stuck in bed, stewing on whatever happened again, I have these amazing photos to remember that my life is amazing. Challenging, yes...but I am blessed. Because I'm living with a chronic illness, I know I'm going to have tough days. However, I try to remember that tomorrow is a new day...the sun will still rise, and I will have another day to keep looking for ways to relieve the pain and enjoy myself.  

And I encourage you to as well. Do something today that makes you happy. Take some pictures, document it, and when things get overwhelming, look back through your photos and remember...

Today was tough, but each morning the sun rises bringing the hope of a new day.

I know March is six months away, but I wanted to share with you our plans for Endometriosis Awareness Month 2015! Rubys on Parade will be our month-long campaign to raise awareness for Endometriosis while bringing you weekly prizes! 

Here's how it will work. Every day in the month of March 2015, we will be posting awareness photos featuring Ruby the Endo Roo and facts about Endometriosis via Facebook and Twitter. You, our followers, can join in our parade by sharing your own awareness photos featuring YOUR Ruby the Endo Roo and using the hashtag #RubysOnParade. We encourage you to utilize whatever social media venue you'd like. We hope to flood social media with our favorite kangaroo! 

Here's the fun part! Each week, we will pick the follower with the most creative contribution to the parade, and award the creator with a prize, including products from our Etsy Shop  (Etsy.com/shop/AskMeAboutMyEndo). At the end of the month, a final winner will be awarded with a TOP SECRET GRAND PRIZE! 

We will share more details about how to enter closer to the event, but until then, start brainstorming and even have a small photo shoot so you have your images ready in time for March. 

We at AMAME are stoked about this fun, positive awareness campaign and the chance to thank our followers for participating! We hope that you will join in the fun and help us raise awareness for this debilitating disease during Endometriosis Awareness Month!

Dear Shutterfly,

You have once again left me hovering between anger and despair after receiving an email advertisement urging me to order a photo book of my baby's sweet face and her first moments. 

I don't have any photos of my baby's sweet face, or her first moments. I can't fill my home with memories of my baby's first year because my baby did not survive past 6 weeks gestation. The photos I have documenting my pregnancy still bring tears to my eyes. I have an empty nursery decorated with handmade curtains and carefully selected mementos of trips taken to Disney with my husband, a quilt made by my mother, an afghan made by my grandmother, a wooden key whittled by my late grandfather.   

This nursery exists because I couldn't bare to look at that empty room any longer after I lost my first pregnancy, a pregnancy I had desperately longed for, battling stage IV endometriosis, for which I have had three surgeries in two years. That empty room reflected my empty womb, devoid of life, a reminder of my failure. I've since decorated it and find hope and peace imagining a day when it will be filled with the laughter of either a biological child or a child born in my heart through adoption. 

I suffered an early loss, and unfortunately made the mistake of signing up for an account on The Bump to track my pregnancy before we really knew whether the pregnancy was viable. I guess I was just so overjoyed at finally, FINALLY getting my wish! So eager to plan for my long-awaited child. But like many women, I found out it was premature, as was my baby's departure from this world. 

I left a message as to why I was canceling my Bump account after my loss, in the hopes that they might have some keyword trigger that would stop the flood of ads for diapers and chord blood banking. Silly me! I had hoped when I cancelled my account with The Bump and requested to opt out of any future emails, I might have spared myself the heartache of receiving updates of how far along I ought to be (as if I wasn't still counting the weeks leading up to my due date). A few weeks before my due date, I received a packet of magazines geared toward expectant mothers, which I threw into the trash immediately. A little pang hit my heart, but I pushed it aside. I received an offer for a free breast pump, and actually considered ordering one anyway, you know...for the future. Heck, I might need it someday! There's still hope! For the most part, though, the ads stopped coming when I opted out...but not yours. 

No, Shutterfly has sent me multiple ads now, although I swear I opted out months ago, reminding me of my early loss and the baby that should be keeping me up at night. In particular, there was a beautifully thought out hard copy ad welcoming my newborn into the world (don't forget to document these early days and save on a photo book!). Really, the quality of that ad was top notch. Instead, I'm up tonight with insomnia, fired up because of your emails.

The straw that broke this camel's back happened in the last 24 hours. I was frustrated, but assumed I must have forgotten to submit my request to be taken off the mailing list, when I opened the email yesterday. It's possible that I misremember...it was a hectic time, and there were so many emails to opt out of. It is truly overwhelming how many companies swoop down on expectant mothers! 

I don't need or want any more of your reminders of where my baby should be today, and all the moments I am NOT documenting and ordering prints of from your website. Yesterday, I opted out AGAIN from receiving "valuable money-saving offers and exciting promotional emails" because I did not want my loss rubbed in my face any longer. I need to focus on the future, and hold onto hope of future motherhood.

Yet, early this morning, as I chatted online with other women struggling to conceive and considering adoption, that familiar ping went off signaling I had another email from Shutterfly. And what do you know...another email urging me to "fill your home with memories of your baby's first year" and turn my birth announcement into a piece of art.

Less than 24 hours after I opted out. 

Shutterfly, this has to stop. On November 30th, just two months from now, I will be faced with the anniversary of the greatest loss I've ever experienced, weeping in my bathroom as my baby slipped through my fingers like so many grains of sand. The last thing I need is an email showcasing your wonderful photo books and souvenir mugs at a 25% discount PLUS FREE SHIPPING! 

When a customer opts out, please...stop sending emails. Offer a space for the person to list the reason they are opting out (because I do enjoy ordering photo books for my wedding and vacations!), and maybe you will spare thousands more couples the heartache of remembering what might have been. 

Please...keep in mind the 1 in 4 pregnancies that end in miscarriage, and change the way you market to expectant parents. 

And maybe, just maybe, I'll utilize your services when I really DO have a sweet smile to cherish.

Sincerely,
A Valued Customer 

As some of you might know, I had emergency gallbladder surgery last week, just 10 weeks after my excision surgery for endometriosis. This makes 5 surgeries in just over 2 years, which feels like...a lot. As you might imagine, my husband and I have sort of created a bit of a routine for making recovery as smooth as possible. Here are our tips:

1. Be prepared!
Of course, there's no real way to prepare for a last minute surgery, but the more prepared you can be, the easier your recovery will be. Whether you are having local or out-of-state care, there are a few things you can stock up on beforehand so that you will have everything you need at your fingertips after surgery. Reducing trips to the drugs store is definitely one way to keep your recovery period as stress free as possible! Check out our blog and video of what to pack to be prepared. 

2. Schedule to have help during the first week
The most important thing to have during your recovery is someone to help you through the first week. This might be a spouse, friend, family member, or even a home health aide. Whether you have a simple diagnostic surgery or a complex case that involves organ removal, you're going to need help getting home, moving around, cooking, cleaning, and monitoring for complications. A caregiver can help keep track of your medications, make sure you get an appropriate amount of exercise and rest,  and stock your fridge with healthy meals that can easily be microwaved. If your caregiver is able to work from home, this is a great option so that they do not need to take sick time or family leave. 

3. Keep moving...a little at a time!
Although it may sound counterintuitive, getting up and moving every two hours promotes healing and helps eliminate gas pain (gas which your surgeon uses to inflate your belly during surgery may remain and cause pain). Start slow, and make small goals, like walking on your own to the bathroom, then the hall, then the nurses' station. While you're in the hospital, nursing staff will help you with this part, but you should keep it up even after you are discharged. I find it refreshing to go for a daily evening walk, say around the block, once I feel up to it. It really helps to get out of the house, even if it is only for 10 minutes. 

4. Be flexible
You may have had some idea of what your recovery might be like when you scheduled your surgery. I can tell you that it can be upsetting to wake up and find out you have several days in the hospital you hadn't planned for, or complications happened and you'll need to wear a drain tube for a couple days. Surgery is unpredictable, even with the most skilled hands, so expecting your recovery to be picture perfect is setting yourself up for disappointment and frustration. Your doctor may have told you that you could return to normal activities after a certain number of days. Don't hold yourself to these expectations. Each surgery is different and each recovery is different (trust me...none of my recoveries have felt the same!). I typically try to plan to be at home for 2 weeks after surgery. Even if you feel better, remember that fatigue is common after surgery. Just like the previous tip, take things one day at a time and make small goals for yourself. If you have a more extensive surgery, you may even want to schedule 4-6 weeks at home after surgery, and may want to return to work part time at first. 

5. Have some savings to cover any loss of income
If you are self-employed or do not have paid sick leave, you'll want to make sure you have a financial airbag in place. You don't want to rush yourself back to work before you are completely healed, and having some savings to fall back on will ease this burden. 

6. Splint Your Belly
No one told me about this tip the first time I had surgery, and I couldn't understand why I was in increasing amounts of pain. Your abdominal muscles need to heal before they can comfortably support the pressure of holding you upright. Hugging a pillow to your belly or wearing an abdominal binder when sitting up and walking around makes a big difference! Also, you may think that returning to a desk job will be easier than a job where you will on your feet. Not necessarily. Sitting upright puts a lot of pressure on your abdominal muscles, which have been cut during your surgery. Putting too much pressure on your belly before you're healed can become very painful. Like everything, take things slow!

7. Avoid clothes that put pressure on your belly
Long, flowing dresses, leggings and tunics, or drawstring/elastic waist shorts/pants are the most comfortable. I find these to be essential during recovery. I also avoid bras with underwire for a little while. Whatever you wear, just make sure it is comfortable!

8. Pamper yourself when you can
If you know you're having surgery, maybe you get a nice haircut beforehand. Maybe you have a friend come over and give you a mani/pedi while you're resting at home, or check out a new book and some movies from your local library. Be kind to yourself, and do something special that will makes you feel good!

9. Make a little "nest" where you'll be resting
Ok, this sounds silly...but hear me out! After you've had pelvic or abdominal surgery, it can really hurt to roll or be jostled in bed. I make myself a little nest of pillows and bed bumpers so that I am not involuntarily tensing my muscles. I also have some comfort items nearby (Ruby, of course, and my 1 liter double walled mug they gave me at the hospital!  I don't know why it comforts me, but it does). Make this space your oasis, full of things that make you feel calm and happy. You might even use some aromatherapy to keep your mood lifted. 

10. Don't be afraid to call your doctor
After my first surgery, I called my surgeon's office almost daily. Was it normal to have so much pain? Is this drainage healthy or sign of infection? When do I remove the steristrips? What's that little string in my incision? Obviously, if you have a lot of questions, you should schedule an appointment to speak in person, but the office can answer any quick inquiries pretty easily. While your first instinct might be to ask in an online support group, your health care is ultimately a matter to discuss with your physician. Surgeons typically have an on-call doctor after hours that patients can call with questions. However, if you have a doctor who is not helping you post-operatively, it might be time to find someone who will. 

11. Trust yourself!
You know your body best. If things don't feel right, follow your instincts. Listen to your body when it tells you it needs to sleep all afternoon, or you're worried something might be wrong. Keep the lines of communication open with your surgeon, and trust your gut! ;)

I hope these tips help you as you heal! Good luck with your recovery, and please share any tips that have helped you after surgery for endometrisois!

10 weeks ago, I had my second out-of-state excision surgery for Endometriosis. Surgery itself can bring on a little anxiety of the unknown (What will the hospital be like? Will they find endometriosis? How will I feel afterward? Will I have to have a catheter? Am I making the right decision?). The last thing a patient needs to worry about is whether or not they have packed everything they need. This video and blog post will help you as you prepare for your surgery, and includes a list of things that helped me before, during, and after my surgery. Also, check out our 11 Tips for Laparoscopic Surgery Recovery!

Your surgeon may require you to complete a bowel prep , which may reduce the risk of infection if there is an injury to the bowels. You will also need to bring some first aid items that will help during your recovery period. To survive your bowel prep and post-op, you will need:

OTC Pain meds - Tylenol, Tylenol PM (no NSAIDS before surgery!)
Allergy Meds - Benedryl, Clariton, inhalers (be aware of different climates and pollen levels!)
Tummy meds (for prep, and post-op nausea) - Antacids, gas relief, anti-nausea, fiber, peppermint tea
Vitamins and herbal supplements
Narcotic pain meds - I got mine from my PCP before I left, just to be sure I would have them
Sore throat relief (breathing tube irritation) - cough drops, chloraseptic spray, tea with honey
Tushy care (for your bowel prep) - Desitin, moist wipes
Pill cutter - sometimes you don't need a whole pain pill :)
Thermometer - to monitor for post-op fevers, or if you're trying to conceive, like me, and are still charting your basal body temperature
Heating pad - the Endo Patient's best friend! I use it on my neck to help me relax and fall asleep naturally. You'll want to avoid using this during your first few days of recovery, however, so that you do not damage the delicate tissue during recovery. You can purchase one of our natural heating pads, for which $1 of each is donated to excision surgery fundraisers, from our Etsy Shop!
Miracle Balls - recommended by my physical therapist, these work like acupressure to release tense muscles

Of course, after surgery you will need to be prepared to care for your incisions and any vaginal bleeding. You may have a hysteroscopy to check for uterine fibroids or polyps. Some people have asked about bleeding during a lap...this is totally ok! If you are on your period, it will be easier for the surgeon to see your endo, since it will be responding to your body's hormones. You may also have bleeding anyway. The surgeons deal with this all the time, so don't worry or feel embarrassed! I prepared with:

Hospital pads (for heavy bleeding, I had these left over from my cyst rupture)
Overnight pads
Gauze pads for cleaning your incisions, and to absorb any drainage (I had a lot from my belly button). You may also want someone to help you the first time you change the dressing...I nearly fainted!
Breathable adhesive gauze pads, which I found to be the best for covering my incisions! The larger size is best for the belly button incision. Your incisions need to be covered to be kept clean and prevent infection, but they also need to have air to dry out. The adhesive gauze pads, with an extra gauze pad underneath, work very well. 
Smaller sized adhesive breathable gauze pads - for smaller incisions
First aid kit

Even though you'll be resting and recovering for a while, you'll still want to feel your best! You might want to bring:

Face wash, moisturizers
Make-up and remover
Body wash
Shampoo/conditioner
Eye drops
Nasal Saline
Shaving cream and razors
Bikini trimmer (to make post-op bleeding a little easier, a trim goes a long way)
Toothbrush/toothpaste
Brush and comb
Deodorant, body spray 

Here are some other items to pack and tips that may make your trip even easier:

• You will also want to pack long, flowy dresses, which are the most comfortable when your belly is bloated and tender. 
• Entertainment: don't forget to pack/load your tablet or laptop with a great playlist of relaxing music (I use my meditating music on Spotify), and some digital copies of your favorite movies!
• Reading materials! I brought my iPad with my Kindle app, along with books a friend let me borrow. 
• Medical records pertaining to pelvic pain, including any imaging. Mine actually filled an entire binder! You will also want to have any color photos of previous laparoscopic surgeries, which will help your surgeon, in conjunction with your medical records, lab-work, and exam. I highly suggest that you order your FULL medical records and read through them thoroughly! You should be an expert on the subject of your body! I was shocked by some of the things I learned. I had no idea that my first documented ovarian cyst was complex, which could have been an endometrioma (it just so happened that my 7cm endometrioma and my most recent complex cyst were on my left ovary). I think it is invaluable to also know what your doctors are putting in your permanent files. I learned that a psychiatrist I saw at a pain management clinic before my diagnosis wrote that my pain was likely psychosomatic (or "in my head"), and that I should be reevaluated before given prescription pain medication (a very common and disrespectful dismissal of endometriosis patients complaints of chronic pain). Knowing all about your medical history and having it in writing will help you to advocate for proper, respectful treatment of your disease. 
• One great thing we encountered upon our arrival at our hotel was that when we mentioned that I am having abdominal surgery, and staying for a week recovering, our hotel offered the use of a mini-fridge and a wheelchair for free! 
• Another great tip is if you qualify as an elite member, either through personal or business travel, some hotels offer an executive lounge where you can find complimentary coffee, tea, cookies, toast, jams, honey, sodas, and other treats. You might also consider getting a room in a hotel that offers a complimentary breakfast. You may be staying a while, and any way to eat for cheap, or better yet, FREE, will help defray the cost of traveling for great surgical care. 
• I am on an anti-inflammatory diet (no gluten, soy, dairy), but I hold off during my prep. As I learned during my bowel prep for my colonoscopy (which went very smoothly), eating low fiber foods and mostly liquids will help make the bowel prep much easier. I prepared last time by only eating applesauce, yogurt, cheese, eggs, white bread, butter, and honey about 4 days before my prep. 2 days before my prep, I ate only clear liquids, such as broth, jello, popsicles, and juice (especially Gatorade). Please consult with your physician about what they recommend to make your prep go smoothly, and also check with your physician before making any dietary changes. 
• Finally, we brought a memory foam mattress topper, since hotel beds tend to be stiff, and for me, uncomfortable. We bought a cheap body pillow and asked for extra hotel pillows to put on either side of me during recovery. I found that propping my body on both sides kept me from tensing my sore abdominal muscles, which caused more pain. Your recovery period will go quicker (and thus, traveling home will be easier!) if you get up every 2 hours and move around a little bit. This can also help with the gas pains, caused by the gas they use to inflate your belly. 
  
• Here are some items that fellow endo patients have found useful during while preparing for their surgeries:
  pillows, small blankets
  ice pack and cooler (if traveling by car)
  books/laptop/activities such as Sudoku or journal
  Gas-X and stool softener
  Throat lozenges, cepacol, products containing benzocaine
  Ginger and peppermint tea for gas pain
  Bible, faith, trust, and prayer
  Thermos of organic tea and raw honey
  Organic biscuits, green powder for nutrients, nutrition supplements
  Aromatherapy, music, compression socks
  Phone charger

I hope these tips will help you prepare for your surgery, and help relieve some of the stress of packing. If you have tips to share, post them in the comments!

We made the announcement recently that $10 of every Ruby, as well as $1 for every item sold in our Etsy shop, will be donated to the excision surgery fundraisers listed on our website. We rebranded our Etsy shop to reflect that mission, and have a new line of heating pads/cold packs that will be a part of that mission. We are stoked to announce that The Natural Market in Groton, MA is interested in carrying the line in their store, and will give us the opportunity to help women in our community, as well as an opportunity to speak at the store about endometriosis. Here's a look at an evening in Kelsey's sewing room, getting a custom Ruby ready to travel to her new home! 

Kelsey hand sews several parts of each Ruby. Parks & Recreation is a favorite show to watch while sewing.

Each Ruby takes at least 3 hours to make. She now comes with our new "Crafting for a Cause" label!

Ruby watches atop a large bag of flax seed from The Natural Market, which we use in our heating pads.

This little Ruby was custom ordered in pink for Michelle.

She's completed and ready for her journey! Here's to spreading awareness and making a difference!

Caitlin has been an active member and amazing source of support in our online and in-person support group for New England based women, Endo Sisters Healing Together, co-founded by AMAME Founder Kelsey Chin, and Stephanie Harrison. Here, she shares her story of battling Endometriosis and seeking excision surgery in the midst of pursuing her degree. 

1. Tell us a little about yourself (name, age, where you're from) 
Hi! I’m Caitlin and I’m 23. I was born and raised in Boston, Massachusetts. I’m currently a Clinical Social Work (Mental Health/Trauma) student living in Baltimore presently. 

2. When did you first show symptoms of endometriosis? 
I’m not really sure if my first periods at 12 were bad, but by 15 I knew something wasn’t right and I shouldn’t feel this bad, or exhausted! 

 3. When did you first seek medical attention for your symptoms? 
I was 16 when we went to my pediatrician and asked about my pain with periods. 

 4. What treatments did the doctors first try? 
First we tried a birth control, which made me VERY moody! After 6 months of that not helping, she said, I think you have Endometriosis and sent me to a well known specialist who got me in pretty quickly. In my first visit with him, he said “I’m 80% sure you have Endometriosis, and I can get you better” and scheduled my first laparoscopy for one month later. It was so fast, and new to me. 

 5. When were you surgically diagnosed with endometriosis? 
I was surgically diagnosed with Endometriosis in December 2008. They found ‘Stage 1 Endometriosis with clear and red lesions in the posterior cul de sac, and on both uterosacral ligaments.’ He used ablation to remove the lesions. My appendix also looked abnormal, so they ended up removing that too. 

 6. Were your symptoms relieved, and if so, for how long? Did you use hormonal suppression after surgery? 
The strange thing was, my most severe symptoms (GI related) were alleviated post-operatively, but I had some new ones come up such as stomach pressure, severe pain with having a BM and a lot of stomach bloating. I was told that they got everything, and I was fine. That these symptoms weren’t from my Endo and I’d have to deal. I was offered continuous birth control, which I was told I “could stay on until I decided to get pregnant” or Lupron. I chose continuous birth control. 

 7. Have you had any subsequent surgeries? 
So after that doctor offered me no other solutions to my existing pains, I decided to leave his practice. I stuck with a really great GYN, who didn’t surgically treat Endometriosis but helped explore options with me. In the fall of 2009, I went to college out of state and was planning to play Division 3 soccer just for fun. I had no idea everything would come tumbling down. We had intensive training and I literally could not run! It caused an awful pain in my left side. So, I was allowed to do all the other exercises. It was crazy how my body physically was becoming fit, but I was so sick – vomiting, in so much pain, so exhausted. So I spoke with my GYN and the school nurse, and they advised me to stop soccer and go home. I waited out a few more weeks, and come mid-September, I medically withdrew. I expected to be ‘okay’ post-surgery and that surgery gave me even more issues than I ever thought. It was an extremely hard time, and the school was not helpful in terms of finances so I ended up with $6,000 worth of debt for 3 weeks. So over the next year, I explored many options – went to a GI doctor who did an endoscopy (I ended up having erosive gastritis from NSAIDS, causing weight loss & pain) and colonoscopy. Went to a Urologist. No answers. I found another doctor who seemed promising. He was very anti-lupron, and helped explore some other options with me (physical therapy, diet changes, different meds…) before I decided surgery was needed in May 2011. That surgery showed: “Filmy adhesions of the sigmoid colon to the left pelvic wall, moderate GI adhesions of the ileum to the right anterior abdominal at the lower quadrant and mid quadrants, and a 1x1 cm peritoneal window at the interior margin of the right uterosacral ligament” but NO evidence of Endometriosis. So I stayed on continuous birth control, and things DID get better. I left to study abroad in England in September and I did pretty well over there. It wasn’t til spring 2012 that I started feeling worse. To make long stories shorter- I thought I found a truly great doctor, after researching about excision, and had surgery in November 2013. She “saw no Endometriosis, no scar tissue, nothing.” She said my issues weren’t Endometriosis. She offered me no answers, only mirena and (thankfully) pelvic PT. So I started pelvic PT in January 2014, and got my mirena out after a month of worsening pains. My GI symptoms almost immediately worsened off of birth control for the first time in 5 years amongst other issues. After an annoying hemorraghic cyst came up in June/July, I decided to have it removed and realized, why do two surgeries (the cyst and then eventual excision?), I contacted Dr. Robbins in Maine and scheduled my 4th laparascopy which I had August 7th, 2014. He found Endometriosis in newer locations than before: my bladder, uterosacral ligaments, rectum and cul de sac. He also repaired my ovary and suspended it to prevent adhesions, and did a presacral neurectomy! 

 8. How many total surgeries have you had, and do you plan on any in the future? 
I have had four now, one excision. I’m hoping there aren’t any more, but am happy I now have a doctor I trust and who knows what to look for and how to remove it! 

9. How are you doing today? 
I’m so happy I trusted myself, found support groups on facebook such as Endometropolis where I learned about excision, the research and doctors who truly care. If I had listened to my last doctor, I have no idea what would have happened to me. My surgery worked out perfectly, as I start grad school in a few short weeks. I was really nervous that I would have to struggle through school until I could have excision. My doctor gave me hope, and believed in me and proved that I did not make these symptoms up; my endometriosis was VERY real and active. I’m very excited for my future and my career, and also want to incorporate Endometriosis awareness into it. I’m trying to start a Baltimore area support group, and do something to raise hope. It makes me so frustrated that I could’ve been better a long time ago, and my doctors mislead me for so long. 

10. If you could tell fellow Endo Sisters one thing, what would that be? 
I would say trust your body. You know you best. Always, always get another opinion and do your research! 

11. If you could tell medical professionals one thing, what would that be? 
NEVER tell a patient to “deal with pain”! That is not okay. I was told that by numerous doctors. Thankfully I’m very head strong and don’t take no for an answer, but some patients really do trust in their physicians. 

12. What would you like the next generation to know about endometriosis? 
I would like them to know painful periods are not normal and not something you should deal with. I’d love for them to know about excision, and how successful it can be as well as the co-existing illnesses (IC, Adenomyosis, PFD…) that go along with Endo. I hope that more providers will start doing excision and steer away from Lupron/hormones especially in young women like myself. 

13. Has living with endometriosis brought about any positive things you may not have experienced without living with this disease? 
It has made me a lot stronger and I think has made me work even harder to get where I have in terms of my career and schooling. School was my big distraction from pain, and gave me a lot of hope. I have also met a lot of wonderful people around the country and world who are some of my closest friends. Endometriosis and pain pushed me to fight harder, and to raise awareness and education to make sure the future generations don’t suffer or feel lost. 

14. Please describe any awareness, advocacy, or support efforts, and how this changed your outlook. 
I’m planning to start a Baltimore area support group, and hope that we can have some in person meetings. Ideally, I’d love to start a walk or something to raise awareness since so many (especially women!) don’t know what Endometriosis is, how serious it is or about excision. I’m still recovering from my excision surgery but plan to start these things ASAP! 

15. What do you recommend to women who are looking for help? 
Joining the facebook group “Endometropolis” – it’s more of a research based group, but I learned so much wonderful information! That was where I first heard about excision and thought “huh?! Why didn’t my doctors do this!? Hormones aren’t my only option?” Endopaedia.info is another great resource, as well as the centerforendo.com! The internet is such a powerful tool, especially for a disease like this that is far too common but ignored. Always do more research and be informed. I’ve heard from many doctors at 22 and younger: ‘we can remove your ovaries’, ‘try lupron’, ‘get pregnant’ or ‘just deal’. I’m so glad I did more research and didn’t listen to them, otherwise I would have given up. Don’t be afraid to reach out to others – whether it’s online in support groups, to your friends, teachers, family or doctors. 


***
Thank you Caitlin for sharing your story! 

For our list of recommended support groups, informational websites, and specialists, check out our Resources page. Endo Sisters Healing Together meets in Sharon, MA every second Saturday of the month. Join our Facebook group to learn more!